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What's One Piece Of Advice You'd Give To Someone Who Was Recently Diagnosed?
A myHSteam Member asked a question 💭
posted August 24, 2022
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A myHSteam Member

Invest in Lume cream to help keep the smell down and bathe with organic turmeric soap it's expensive but it helps

posted August 24, 2022
A myHSteam Member

I have been asked recently if I have been tested for hepatitis B and aids
But that’s impossible and I have been tested for aids anyway don’t see what that has anything to do with this condition
They have not got a clue about this condition and just running around in circles and blaming us for it in lifestyle
As if we would want this

posted August 25, 2022
A myHSteam Member

I highly recommend seeing someone who has treated many people with HS over a period of years. My surgical dermatologist is such a person..he has a practice in Boston and Florida, and has on the order of 100 patients with HS at any given time. An ordinary dermatologist who has no experience treating HS is not qualified to treat people with HS. One person here recommended going online and looking at Practice Updates...this is a site intended for medical professionals, but you can register and do searches...and find current articles on the treatment of HS. I am certainly no expert...those articles are not easy to read but I do know there are three stages of HS: the Hurly stage I, II, and III and different types of treatment are appropriate for each stage...its worth trying to read a survey article to have a high level understanding of the disease.
Even my surgical dermatologist, who treated me for the last 15 years, was unsure of my diagnosis until a pathologist called it to his attention in the results obtained from a biopsy. That's how hard this disease is to correctly diagnose. I was apparently atypical for people diagnosed with HS as I am very lean, and male. However, I distinctly remember that my mom suffered with cysts in her groin...there is clearly a genetic component to HS.

posted August 24, 2022
A myHSteam Member

Peer input is important. But you should always look to factual information and medical advice before implementation of any advice given. For example vitamins and supplements of any kind should always be discussed with your practitioners as advice doesn't take into consideration your medical history including the possiblity of drug interactions.
Antibiotics are only used to reduce inflammation HS is not infection try and find your triggers. Hormones insulin, sex and brain all effect HS. That's why medications like Metformin, spironolactone, finestra, birth control are all worth discussing with your doctor as off label treatments.
First and foremost stay safe💐💜
There might not be one thing to take to rectify HS 100% but a combination can get us close or there. Lifestyle, food, hormones, environmental are all things that factors in.Remember HS is complex take it one day at a time.

posted August 24, 2022 (edited)
A myHSteam Member

I mentioned above the importance of finding a specialist who had treated many HS patients...I thought I might share my routine for minimizing flares:
(1) shower daily with an antibacterial soap that has 10% benzoyl peroxide( this was recommended by a dermatologist who was not an expert on HS, but I definitely think its helping me....note that in the original version of this post I said 10% hydrogen peroxide...that was a mistake for which I apologize)
(2) after the shower, I put 2% clindamycin gel on my face, groin, perianal region, genitals, and buttocks
(3) when I get a small flare that looks like Folliculitis, I apply Mupirocin topical antibiotic twice daily...some times this will prevent a lesion from progressing to a large abcess....sometimes not
(4) in the case where it appears that (3) has failed, I go to see my surgical dermatologist, and he performs an incisional biopsy
(5) I treat the incisional biopsy with Mupirocin twice daily for several weeks or until the skin appears almost normal. If the biopsy is large, I cover it with a non latex bandaid, and clean any discharge with sterile gauze
(6) I always use finger cots to apply any Mupirocin to either a lesion or incisional biopsy
I have recently struggled with a 1/2 inch incisional biopsy which after a week and 3 days is looking as if its healing, as I no longer need a bandaid, and the discharge is minimal. Maybe this routine will help someone...I have had surgical procedures on the order of 4 times a year for the last 15 years.

posted August 25, 2022 (edited)

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